Hi All

I have been breathless for 2 years now. I don't have thyroids at all and taking 75mcg levo daily. The endo wanted me to start taking 50 for 5 days and 75 on weekends. I have now upped mine to 100 mcg per day and the 1st week the breathlessness went away but its back again. Because my blood results fall within the range they say I need to continue with these low dozages. I honestly don't know what to do and this is starting to depress me


8 Replies

  • ThyroidHell,

    What were your thyroid results and the ranges (the figures in brackets after results)?

  • 8-4-16 TSH = 0.18 ( 0.35-5.5 ) T4 = 14.3 ( 10-19.8) T3 = 4.2 ( 3.55-5.44 ) I had blood test 1-9-16 but I am yet to see the GP for the results , I got an appointment to see Endo in mid November and need to have another blood test 2 weeks before that which includes T3 again

  • Well, it sounds like you're under-medicated. Your FT3 isn't even mid-range. And 100 mcg isn't a very big dose for someone with no thyroid.

    But, also ask to have your vit D, vit B12, folate and ferritin tested. Nutritional deficiencies can also cause breathlessness. As can problems with the heart. Have you had that investigated?

  • Hi Greygoose

    I am on vitD at the moment ( been taking them well over 6 months now ) B12 is normal so is the others. I had heart tested , ultrasound , echo the lot , I even had chest xray but haven't managed to get to GP for results yet which I will try to get tomorrow ( I think if there was something wrong with the chest they would have contacted me by now as its been a month ) I cant actually believe the endo , he wanted me to go 50 mcg and 75 on weekends , what Am I a guinea big? ' Lets see how low a dose she will survive even though she haven't got thyroids ' I think ... My understading would be ' good , lets see if she manages to thrive from higher dose of thyroxine ' what is this madness with thyroid!

  • I wish I knew!

    But, as for your nutrients, there's no such thing as 'normal'. Do you have the actual figures? The range is vast, and a doctor, not knowing any better, thinks that right at the bottom is as good as the top - which is obviously nonsense! So, if you haven't got the numbers, best ask for them. :)

  • 75 mcg levo is a very low dose for someone with no thyroid.

    As your endo is so reliant on blood test results you need to manipulate your blood tests to get the results you need. If you do not take any levo for 48 hours before your next blood test your results will be worse and the endo should give you the increase in your levo which you need.

    This may sound like an awful thing to do but doctors put their patients in this situation and leave them to suffer.

  • No, it's not awful - a girl's gotta do what a girl's gotta do! lol

    But, I'm not sure that just stopping the levo for 48 hours will raise the TSH sufficiently.

    Thyroidhell, do you have your test early in the morning - before 9 am - and fast over-night? That will give the highest possible TSH.

    Leaving a large gap between your last dose and the test will lower the FT4, but if the doctor only looks at the TSH, that won't help. :(

  • I have left 24 hours previously without levo when I have a blood test but mid november I will do the 48 hours. The Endo doesn't even know I have upped mine to 100mcg but my GP does ( lucky to have a good gp actually as he listens and knows he cant fob me off ) I have mine before 7am and straight to work from there. The thing is buzzling me that we have a chap at work who is on 200mcg levo and he has his thyroids , although he does fall asleep at his desk ! I have thyroids but having measly 50mcg per day. So looking this is bloody clear that its nonsense to stare the blood results like a religion because clearly we are all individuals with own needs and not in the same mould! The average where you should fall is not working for everyone !

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